I need advice. So many people out there have LO's who still have their spouses around or live with a son/daughter. My mom has moderate LBD and is SO lonely in her assisted living apartment. Dad passed away 8 years ago and I live 20 minutes away. I work full time and visit her 2-3 times a week after work or on weekends.

I don't think she is ready for memory care, but the head nurse suggested it lately. I would say she has just entered the moderate stage. Mom has been found out in the hallway in the wee hours of the morning, thinking it was daytime, and wondering where the dining room was. This happened maybe twice in two months. Maybe three times. Mom is not the type to go outside. She can feed herself, do most of her clothing herself (lately she needs a little help), walk, read, watch tv. She now has escorts to meals because she gets confused by the time. She is often confused about things and has some hallucinations (mainly seeing me or my sister in her apartment.) Lately she has needed help with bathing.

Personally I think she is on the fence for needing the memory care unit in her facility. She would not like it (at first) because she would think it's like a "prison" and the people there would not be as social or "normal." I think the activities in the memory care unit would be great for her though. She does NOTHING but watch tv. She has no motivation to do anything anymore. Not laundry, not bingo, not puzzles, not anything. Can't get her to exercise or walk either.

When is the right time to consider moving her? Is it ok for someone to be alone most of the day who has confusion a lot and a few hallucinations? Staff stop in to help with things about 4-5 times a day. (meds, escort to meals, dressing assistance.) She called me just now and wants me to go see her after work...that would make three nights in a row. Sigh.

Thoughts????

Wed Aug 01, 2012 5:57 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Lonely/bored Mom in ALF: When to move to memory care?

I suggest that you tour the memory care unit where you are thinking of placing her and see how well you think she'd fit in. It may be fine or it might be totally inappropriate at this time. Don't expect that if you move her she will start participating in anything. My dad withdrew from just about everything and eventually even TV had no appeal, and he didn't know what he was watching anyway. Things will change and then you may decide that the time is right for memory care. Despite my dad's very diminished mental capacity he stayed in his AL room until he died. He was nowhere near as bad off cognitively as the people in the memory care place at his ALF, so he got very angry and depressed when he had to eat his meals "with those people" (his words). Your mom doesn't sound anywhere near as bad off as my dad so I'd be careful about what sort of change I'd make at this point.I know it's hard to visit a lot - can other friends, relatives or people from other organizations be scheduled to visit? It's very frustrating when our LOs live in these nice ALFs where there are all sorts of activities and people around, but they refuse to participate in anything. BTDT It seems to be part of the disease so no matter how much cajoling, our LOs will probably become more and more withdrawn, eventually even from TV watching. Sending you a big hug, I know how hard it is. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Aug 01, 2012 10:26 pm

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

Lynn, thanks for the hug. I sure needed it this morning. Mom had her WORST night yet in this whole LBD journey. She was so paranoid she called 911 and the police came. She saw a big man with keys and thought the night aid was going to "steal her apartment." She thought her clothes were all stolen. Of course I did not know about all this until the head nurse called me in the morning. The staff there is great...but they can't be with her all the time. She also tried to hit the night aid and refused her meds until an hour later. This is the first time anything like this has happened. My mom is a sweet, shy, gentle person. The hardest part was hearing that later, when they got her to bed (she was SO tired), she was crying a little and when asked how she felt, she said, "Sad." She apparently knows the trouble she caused last night and feels horrible about it. That just breaks my heart. Taking her to her neurologist this afternoon and hopefully she will offer some kind of solution/drug. My mom is on Sinemet, Exelon patch, low dose of Effexor.

I did tour her memory care unit as well as another one closer to my house. But what I need to find out is what the real difference would be between AL and memory care, in terms of activities, and also what the people are like. So I will ask more questions. Thanks for the advice.

Thu Aug 02, 2012 10:23 am

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Lonely/bored Mom in ALF: When to move to memory care?

slbeuning wrote:

I did tour her memory care unit as well as another one closer to my house. But what I need to find out is what the real difference would be between AL and memory care, in terms of activities, and also what the people are like. So I will ask more questions. Thanks for the advice.

My question is were they not having any activities in the ALF for your Mom? I can't imagine that there would be more in the memory care unit. I hope you have some luck trying to get answers as to the best place for your mom but sadly I think she will be lonely in both places. Good Luck!

_________________Irene Selak

Thu Aug 02, 2012 4:36 pm

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

They do have activities in both; I was just hoping that in memory care they would encourage her more to join in on stuff.

I guess I need to really check things out. Thanks so much for comments.

Thu Aug 02, 2012 10:15 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Lonely/bored Mom in ALF: When to move to memory care?

Yes I suspect not too much will change as far as how your mom feels but check every option the best you can.... Good Luck

_________________Irene Selak

Fri Aug 03, 2012 11:45 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Lonely/bored Mom in ALF: When to move to memory care?

I'd spend some time in the memory care unit at different times of day. I would definitely go in there during at least one meal time, preferably lunch or dinner. I'd also go in during mid morning or afternoon. You need to see the level of the folks living there and how the staff interacts with them in various capacities.Here's my take on someone with this disease and participating in activities - if they didn't want to participate when they were in the ALF and they have now declined to the point of being in memory care, it is even less likely they will participate. I'm sure there are a few people out there who have had different experience but I've now had very personal experience with my dad, my dad's best friend and currently my aunt. All of them became less and less social and less and less interested in doing ANYTHING. Even watching tv. Definitely not activities at their facilities. Definitely not wanting to meet new people or join in any activity with them. Just don't beat yourself up because of this. It is what it is despite a CGs best efforts. Encourage, but drop it if they don't want to do anything. It will only get you discouraged and depressed to keep trying something that isn't working. Best, Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Fri Aug 03, 2012 9:45 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Lonely/bored Mom in ALF: When to move to memory care?

My experience has been the same as Lynn's as far as LOs' participation in activities. My mother's interest in anything from the SNF's activities to socializing has been in a downward spiral as her disease progresses. She started out with losing her ability to do activities she used to love, like reading and knitting, and has progressed to where she doesn't even want to watch TV. I don't think a CG can fix this even if s/he wants to. Try not to feel guilty about it if your LO isn't interested.

Julianne

Sat Aug 04, 2012 9:05 am

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

You know, those are helpful comments because I think my expectations need to be a little more realistic when we do move her. Even within the last couple weeks she isn't even enjoying tv as much. Of course, she has had a rough couple weeks with a UTI and a medication change. Thanks for the comment about not beating myself up over it...I needed to hear that.

Sun Aug 05, 2012 10:26 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Lonely/bored Mom in ALF: When to move to memory care?

There may be exceptions but it seems that most Lewys tend to lose interest in activities. My husband lives pretty much in his own head, which is lively with delusions. He still plays balloon ball two mornings a week because it gives him a chance to hit things. Since I'm a balloon ball volunteer, I get to participate and observe. Some days he can't hit the balloon at all but some days he bats it pretty well.

He doesn't watch TV or listen to music any more. I bought him a $500 Bose music system last year for his birthday and he gets no pleasure from it. He used to love good music. He could name almost every composer and every piece. Music was what brought us together and it's sad we can't share it any more.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Aug 06, 2012 12:06 am

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

Just an update. Moving mom to memory care in 2-3 weeks. It's definitely time. Her delusions and confusion are steadily increasing week by week. Of course the stress of moving will make this a bit worse for a while. Just talked to one of the nurses in AL who knows mom well and she assured me that in memory care there would be actually MORE gentle encouragement to participate in activities than in AL. More easy activities (tossing a ball, painting nails, peeling potatoes or whatever) going on there. I am so ready for her to move and have the appropriate care she needs! Thanks all!

Sat Sep 15, 2012 7:36 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Re: Lonely/bored Mom in ALF: When to move to memory care?

I am glad the decision has been made and I am sure it is a great relief for you and I hope it all goes well for moving day, let us know !

_________________Irene Selak

Mon Sep 17, 2012 5:51 pm

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

Hi everyone, Thought I'd give you an update on mom. She is doing great! Yes, the disease continues to take its toll on her short-term memory and she is now needing help with all of her ADL's except eating, but she is content in the new memory care place. If she had stayed in Assisted Living I think we both would be miserable right now. In memory care the staff know where she is, generally what she is doing, and they KNOW her so much better than in AL. They also are just all so much more flexible. So what if mom puts on her nightgown (backwards and inside out) at 2 in the afternoon and then wanders out to watch a little TV? Or if she's not hungry for dinner? No big deal...they know how to roll with it. I love that!!! She is also the only one (there's only 6 residents there because it's a new facility) who participates regularly in the simple activities: painting pumpkins, or helping make muffins, or cutting coupons. Mom is hardly in her apartment because she likes to be out in the common area where the (few) people are just hanging out. No conversation required. She just likes to have the people around her. Yes, the disease continues, and yes, her mobility is less, but just knowing she is more safe and being watched over 24/7 is such a stress reliever. Plus she is now only a 5 minute drive away and what a blessing that is. It used to be 20 minutes. So for anyone out there who is considering a move where there is more support, obviously no guarantees that it's going to go this smoothly but I hope this gives you encouragement, if you are a stressed out caregiver, that the right placement with a great staff can be wonderful. Today mom held the hand of a lady who was freaking out all day (yelling, out of control) (I think she has Alzheimers) and had a few moments of calm with her...and mom felt good that she could be a blessing to someone. Pretty cool. There will be hard times ahead but this is a really nice breather. I give credit to God who answered my many prayers and also the prayers of many, many co-workers and friends.

Tue Nov 06, 2012 10:19 pm

Eyckmans

Joined: Fri Apr 06, 2012 10:19 pmPosts: 27

Re: Lonely/bored Mom in ALF: When to move to memory care?

So glad that your Mum has settled well. It sounds like a great place. I still have my Dad at home and he generally does really well and I think that is a lot to do with not stressing him about anything like when he wears clothes back to front or buttoned incorrectly etc. I just tell him well done when he manages it himself without help and don't point out that he has done it wrong. I'm really pleased for you that you have found a place for your Mum that understands that there is no need to stress them over unimportant things.

Wed Nov 07, 2012 10:26 am

slbeuning

Joined: Mon Jul 11, 2011 11:46 pmPosts: 17

Re: Lonely/bored Mom in ALF: When to move to memory care?

Yes, it has a lot to do with the health aides and what their expectations/roles are. In AL settings it is assumed the person is pretty much able to be by themselves most of the day and the health aides pop in to do a task at the scheduled time. In memory care things are much more flexible and "homey" if that makes sense. Blessings to you as you care for your dad at home.

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